Humanise and demedicalise Undetectable=Untransmittable in Thailand
Nittaya Phanuphak A * , Jarunee Siriphan B , Aree Kumpitak C , Niwat Suwanpattana D and Patchara Benjarattanaporn DA Institute of HIV Research and Innovation (IHRI), Bangkok, Thailand.
B Foundation for AIDS Rights (FAR), Bangkok, Thailand.
C Thai Network of People Living with HIV (TNP+), Bangkok, Thailand.
D UNAIDS Thailand Country Office, Bangkok, Thailand.
Sexual Health - https://doi.org/10.1071/SH23060
Submitted: 23 March 2023 Accepted: 14 June 2023 Published online: 29 June 2023
© 2023 The Author(s) (or their employer(s)). Published by CSIRO Publishing. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)
Abstract
Background: Thailand National AIDS Committee endorsed Undetectable=Untransmittable (U=U) as a science which needs an urgent translation into actions to address pervasive stigma faced by people living with HIV (PLHIV). We aimed at humanising and demedicalising U=U by exploring a ‘people-centered value’ of U=U and translate them into efficient U=U communications.
Methods: During August–September 2022, in-depth interviews were conducted with 43 PLHIV and 17 partners from various background in five regions of Thailand. Focus group discussions were made with 28 healthcare providers (HCPs) and 11 PLHIV peers. Thematic analysis was used for data analysis.
Results: Among PLHIV, how U=U frees them up to ‘live a full life’ was valued highest. A great relief from sin, immorality, and irresponsibility was mentioned by all. U=U communications allowed PLHIV and their partners to love/be loved and enjoy intimacy and sex with pleasure again. HCPs and PLHIV peers almost always refer U=U value to ‘physical health’. Common concerns were around increasing sexually transmitted infections with condomless sex. The people-centered U=U values, together with dismantling of power imbalance within healthcare system and sexual health skills empowerment among providers, were used to develop a humanised and demedicalised National U=U Training Curriculum. The Curriculum was highlighted in country’s planned activities to address multi-level/multi-setting stigma and discrimination.
Conclusions: U=U can be successfully humanised and demedicalised in designing efficient communications. At an individual level, U=U can address one’s intersectional stigmatizing attitudes. At a policy level, national endorsement can initiate and sustain tangible actions and interest around U=U across country’s leaderships.
Keywords: demedicalising, discrimination, humanising, intersectional, multi-level, multi-setting, people-centred values, South-East Asia, stigma, Thailand, U=U, Undetectable=Untransmittable.
Introduction
In February 2020, a post made by a Thai influencer offering to teach the public how to have safe bareback sex was shared on Facebook by a student nurse who used an angry caption.1 The influencer is open on social media about living with HIV, his sex work, and use of stimulant drugs. He used Undetectable=Untransmittable (U=U) as a back-up theory for this particular post, which was made in January 2019. This incident sparked a large public outrage with hundreds of thousands of users on Facebook and Twitter condemning his condomless sex as irresponsible, a Buddhist’s sin, and a public threat. A few HIV doctors who spoke publicly in support of U=U received an extreme backlash, including death threats and threats from fellow doctors that their medical licenses should be removed. Several doctors criticised the science of PARTNER, PARTNER2, and Opposites Attract,2–4 which demonstrated that people living with HIV (PLHIV) who achieve and maintain an undetectable viral load by taking and adhering to antiretroviral therapy as prescribed cannot sexually transmit the virus to others, as inapplicable to Thailand’s setting.
A call-for-action was subsequently made by the Institute of HIV Research and Innovation (IHRI) asking for these following actions.1 Relevant stakeholders must expand truths and challenge misconceptions about U=U and ensure this science is put into practice. Doctors need to be formally educated about U=U and how to apply it in clinical practice. In Thailand, medical authorities such as the Ministry of Public Health (MOPH), Thai AIDS Society, and Thai Medical Council, as well as Thai Network of People Living with HIV (TNP+), must publicly endorse U=U. International HIV communities, researchers, clinicians, PLHIV, and policymakers should seriously strategise dissemination of this evidence-based U=U message to educate wider global communities. Other preventive methods must be made accessible in a non-judgmental way to people who made an informed decision to practice condomless sex, regardless of their HIV status. Several statements from the Prevention Access Campaign and Asia Pacific Coalition of Male Sexual Health, the International AIDS Society, Principle Investigators of studies that generated U=U science, the World Health Organization, UNAIDS, and Thailand MOPH were issued to support this call-for-action.5–7
The momentum of U=U implementation in Thailand changed when U=U was endorsed in June 2022 by the National AIDS Committee as a key strategy for ending AIDS. This was a result of a yearlong effort carried out by its Subcommittee on AIDS Rights Protection and Promotion. The Foundation for AIDS Rights (FAR) and the Thailand MOPH’s Department of Disease Control acted as the Subcommittee’s civil society and government co-secretariats, respectively. U=U was proposed by the Subcommittee to the National AIDS Committee as a science, which needs an urgent translation into actions to address pervasive stigma faced daily by PLHIV in healthcare, workplace, and educational settings.
Exploring U=U values among PLHIV, their partners and healthcare providers
The Joint United Nations Programme on HIV/AIDS (UNAIDS) Focal Country Collaboration initiative on stigma and discrimination awarded a grant to the team co-led by IHRI, FAR, and TNP+ in June 2022 to implement a program titled ‘Using U=U to explore and address multi-level and intersectional HIV-related stigma and discrimination’. The program aimed to humanise and demedicalise U=U by exploring a ‘people-centred value’ of U=U given by various stakeholders and translate these values into efficient U=U communications beyond the healthcare setting. To humanise U=U is to inject compassion and empathy into the meaning of U=U to make it more pleasant and suitable for people. To demedicalise U=U is to shift from a disease-focused to a people-centred approach in communications through demystification, destigmatisation and decentralisation.8
During August–September 2022, in-depth interviews were conducted with 43 PLHIV and 17 partners of PLHIV in serodiscordant relationships representing people from various backgrounds, including those who were gender-diverse, migrants, sex workers, using drugs, and living in five different regions of Thailand. Focus group discussions were also held with 28 healthcare providers and 11 PLHIV peers in hospitals from these five regions. The interview and focus group discussion guides were developed together with Thai PLHIV and HIV healthcare providers. No ethics review approval was sought as this was considered part of a scoping review for the National U=U Training Curriculum development. Those who participated in the interview and focus group discussions were compensated 500 THB for their time and travel. Thematic analysis was used for data analysis.
Findings from in-depth interviews and focus group discussions
Among PLHIV, how U=U frees them up to ‘live a full life’ was valued highest. A great relief from sin, immorality, and irresponsibility was mentioned by all PLHIV after knowing about U=U. Both PLHIV and their partners foresaw that U=U communications would allow them to be able to love, to be loved, and to enjoy intimacy and sex with pleasure again. A majority of PLHIV and their partners stated that they should have been told about U=U decades ago (Table 1).
Key themes | Quotes | |
---|---|---|
People living with HIV (PLHIV) | What did HIV take away from you? | What does U=U mean to you? |
Relationship, intimacy, sexual pleasure I’m afraid my partner will get it [HIV]. Even if we use condom, I’m still afraid. When we make love, we make it very gently. [We’re] afraid of condom breakage. (Female, PLHIV) [I] don’t think anybody would want me. I might be alone for the rest of my life. (Female, PLHIV) I asked ‘You used to sleep hug with me, why don’t you do that now?’. (Female, PLHIV) My sexual pleasure disappeared. I am afraid that he would get infected because it is sexually transmitted. Our sex, sometimes, I just didn’t want to have sex with him. (Female, PLHIV) Opportunities to fulfil one’s family and work life I was afraid of giving the virus to my partner, afraid of infecting my baby, so [I] didn’t plan to have a child. If now I can, I still want to [have a child]. (Female, PLHIV) I wanted to work abroad like others but I couldn’t because I have HIV. It is a condition in my life that my blood test would not pass. (Female, PLHIV) | Relationship, intimacy, sexual pleasure If [I] happen to find someone who doesn’t have HIV, I’m brave enough to be in a relationship. Just that I have to see if I can suppress my virus. If yes, I’m brave enough. (Male, PLHIV) I will not lock myself up anymore. Knowing about this, I will be more brave to go out. Or if someone is hitting on me, [I] will be brave enough to love that person. (Female, PLHIV) I feel much better. I am glad. May be I don’t have to use condoms sometimes. I don’t have to worry about [my partner] getting infected. (Female, PLHIV) Opportunities to fulfil one’s family and work life [I’m] very relieved. Undetectable is like I am not ill anymore, like I am cured from this disease. I deserved it as I have always been careful with taking my medicine. (Female, PLHIV) Knowing about this [U=U] gives me encouragement to take medicine. [It] gives me hope to fight the disease. I can live until old age. I don’t care what people think [about me]. (Female, PLHIV) | |
Self-respect and dignity I always feel sinful. [I’m] worried all the time that I will infect others. (Female, PLHIV) I always think that it is karma that I got infected. (Female, PLHIV) [I] blamed myself, yelled at myself, accused myself of this mistake. Why didn’t [I] use protection knowing that I was in a risk group? (Men who have sex with men (MSM), PLHIV) I don’t want to have a boyfriend because I don’t want to make a sin. He comes with pureness but I only have pure heart – my body is not pure. It is an infectious virus so I just cut this out [of my life]. (Female, PLHIV) I still believe it is a sin. I don’t want my girl [PLHIV] to have a boyfriend or a child because I don’t want her to further make a sin. (Female, PLHIV) | Self-respect and dignity I feel more valued, not being sinful and distressing. (Female, PLHIV) I feel that I am no different to other people. I just make my living in an ordinary way – I can do everything [that other people can]. (Female, PLHIV) | |
Partners of PLHIV | What did HIV take away from you and your relationship? | What does U=U mean to you? |
Fear of getting infected [I am] worried sometimes. [We] only have sex once in a while. Even that he used condom, [I am] secretly worried that there could be a mistake. (Female, partner of PLHIV) I want to test one more time. That only one time that he didn’t use condom has haunted me. It made me want to test all the time. (Female, partner of PLHIV) It reduced [sexual pleasure] because I am quite an anxious person. [I am] worried even with protection. (Female, partner of PLHIV) | Relief from fear of getting infected I feel more relieved because deep inside I am afraid of making a mistake – forget to use condom or have a condom breakage. Now I know for sure that I will not get infected. (Male, partner of PLHIV) [I am] more confident. I can do anything I want in the society – do it fully without any worry. I don’t have to think if I’m going to make a sin. (Female, partner of PLHIV) At least I will tell my mom about U=U so that she would stop worrying that her daughter-in-law would harm me. I will not get infected by my wife. Grandchildren can also live with dad and mom. (Male, partner of PLHIV) It [U=U] makes me feel more confident that we can have a child. (Female, partner of PLHIV) Using U=U to support a partner who lives with HIV [I will] try to communicate to make him/her less worried, not feel guilty, reduce self-stigmatisation. (Male, partner of PLHIV) I can kiss her, hug her, proudly. (Male, partner of PLHIV) I can see the future that I will live with this person for the rest of my life. (Male, partner of PLHIV) I remind her to take medicine right on time. Nothing will impact our lives. I already chose her and will be with her lifelong. (Male, partner of PLHIV) | |
Healthcare providers and PLHIV peers | What are concerns in communicating U=U? | What does U=U mean to you? |
I don’t talk about U=U because I’m afraid that PLHIV will give the virus to others and will not use protection. [I] don’t know if they will use condoms that we provide or not. (PLHIV peer) I explained what I know but I admit that I only told part of it [U=U] because I’m afraid they [PLHIV] will not use protection, [and] don’t want to take medicines. (Healthcare provider) [We have to] communicate in a simple way to ensure that they [PLHIV] know that continuing to take medicine is most important. [U=U] does not mean not having to take medicine. It is not U=U=stop taking medicine. (Healthcare provider) I told them [PLHIV] about U=U and normal life but that they must concern about (the increased chance of getting) sexually transmitted infections [STIs]. Syphilis among men who have sex with men is so common, hepatitis as well. I’m worried about this. We will need to monitor the number of STI cases which may increase if we communicate more about U=U. (Healthcare provider) I will not talk about U=U at all to those [PLHIV] who have multiple partners. I think protection is better than no protection. Deep down inside me, I want every PLHIV to use condoms. (Healthcare provider) | If we can communicate U=U widely in the public, it will make people come forward for HIV testing more easily. [Because] when one gets linked to treatment, it equals prevention. Even if they are PLHIV, they can always be PLHIV who are independent and do not transmit the virus to anyone. They can have a partner, a child, and live a life the way they want. It is just a chronic disease. (PLHIV peer) It [U=U] gives us confidence to talk to PLHIV that it [the risk] is zero if they take their medicine regularly. [They] cannot transmit the virus. [This] is an option for them to have a couple life. (Healthcare provider) They [PLHIV] will be more relieved that they are not a person who can infect other people. They will not stigmatise themselves [thinking] that they will harm and infect other people. (Healthcare provider) |
Healthcare providers and PLHIV peers, when asked about their thoughts on U=U, almost always refer the first value of U=U to ‘physical health’ and a long healthy life. The value of U=U in ensuring that PLHIV can also live a normal life usually comes after. U=U science is heard although without adequate opportunities for HCPs and PLHIV peers to have their concerns addressed or clarified. Many myths from the past were still used to guide counselling practice, (e.g. PLHIV can acquire new (drug-resistant) HIV strain from others, even with an undetectable viral load, if they did not use a condom). There were also common concerns around increasing sexually transmitted infections and unplanned pregnancies with condomless sex. Once remaining myths and concerns were clarified, healthcare providers felt unlocked; they felt much more confident in communicating U=U directly and correctly.
Strategies to humanise and demedicalise U=U
Power imbalance in a paternalistic provider–client relationship does not support client’s autonomy to make an informed health decision in a Thai healthcare setting. The hierarchical healthcare system in Thailand also portrays a doctor as a gatekeeper for any new innovations to be implemented. Together, these medicalised U=U acted as main barriers to the communication of the U=U theory.9 Healthcare providers in general are not sensitised and lacking skills in communicating about sexual life, sexual health and relationships with their clients. The people-centred values of the U=U theory, together with the dismantling of the power imbalance within the healthcare provider–PLHIV relationship and sexual health skills empowerment among providers, were used to develop a humanised and demedicalised National U=U Training Curriculum. IHRI, FAR and TNP+ co-developed and piloted the Curriculum and training tools.
The National U=U Training Curriculum contains the following key modules: (1) Fine: participants are asked to charge a fine to a PLHIV who had condomless sex, then were asked to play the role of a PLHIV and give a reason why a condom was not used; (2) HIV Journey: a brainstorming session is conducted to review the evolution of the HIV epidemic and treatment availability in Thailand, which affected how healthcare providers communicated with PLHIV about sex and relationships; (3) U=U facts and myths: a brief informative session is held followed by an extensive Q&A session to clear up myths and highlight outdated counselling messages; (4) U=U values: participants learn from quotes made by PLHIV and their partners about what HIV took from them and how U=U can unlock guilt and allow them to enjoy life; (5) Take a Condom Side: participants are asked to play the role of a PLHIV who, after learning about U=U, will make a decision about whether to use a condom for sex that night; participants then hear various reasons – including the aspects of sex, sexual pleasure, and relationship – from their fellow participants on why they decided to use or not to use a condom; (6) Countering Automatic Negative Thoughts: participants review the answers from the Fine module session, are asked if they would like to change their mind, and reflect on how a ‘fine’ represents immediate judgmental attitudes and discriminative actions toward PLHIV clients in a healthcare setting; (7) Power Dynamics: a role-playing session is undertaken to understand the reasons and impacts of power imbalance in the healthcare setting and to re-design how power can be balanced in a healthy way; and (8) Designing U=U Communication: participants are asked to design and role-play how they will communicate U=U to their clients and the public.
Three documentaries have been developed to communicate U=U clinical and social science facts with the audience.10 The first documentary targets the general public. The second one uses healthcare providers to communicate with their professional friends about implementing U=U in a real-life setting. The last one communicates to PLHIV and their partners on how U=U allows them to live self-determined lives.
On 1 December 2022, a national event ‘The Declaration of U=U: Equal healthcare system for all, people living with HIV equals everyone’ was held to demonstrate Thailand’s commitment to using U=U as a main strategy to end AIDS and ensure that PLHIV can live an equal life to everyone else. The event was attended by 150 representatives from 28 civil society, governmental, and private sectors and raised public awareness about how people-centred U=U messages to combat stigma and discrimination related to HIV and diversity can be used in healthcare, workplace, and educational settings. U=U values quotes from the Assistant to the Public Health Minister, TNP+ Chair, Senior Prosecutor, National Congress of the Thai Labour Chair, a University Instructor, and a leading infectious disease doctor were used to produce a series of poster roll-ups and e-posters for dissemination. In addition, two National Working Groups were established to progress the U=U implementation in Thailand. The National U=U Strategic Plan Working Group worked toward having the U=U strategic plan being endorsed though a national event, implemented, and monitored. The National U=U Training Curriculum and Guidelines Working Group ensured that the development and implementation of the curriculum and guidelines are based on the people-centred U=U values.
Conclusion
U=U can be successfully humanised and demedicalised for efficient communication and implementation. At an individual and relationship level, U=U can be used to delve into and address one’s stigmatising attitudes toward HIV and other personal attributes of a person living with or at risk of HIV, including those related to intimacy, sex, and sexual pleasure. At a community level, U=U can tackle stigma and discriminatory practices beyond the healthcare setting. At a policy level, national U=U endorsement can initiate and sustain tangible actions and interest across the country’s leadership groups toward the goal of ending AIDS.
References
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